Tuesday, May 20, 2014

Tuesday, Two Months,Two Days.

We get to do the walkthrough of our house today! After moving 2 months ago, we close on our house in 2 days! We are more than ready to get out of this hotel! Hopefully we will get internet quickly and I will be able to post pics of our new home in a few weeks. :) Also, once we settle, I hope to get back to posting regularly. :)
This was the first picture I posted to our blog on December 10, 2007, (2 years to the day that Carousel would enter this world). :) This picture was taken in June(ish) 2007. We had been married a few months- now 7 years later, we have moved cities twice and we are about to settle into our 3rd home. Jersey was still a puppy, (not even a year old), and now he is an old man and Carousel is about to be 4.5. Time flies!

Wednesday, May 14, 2014

Bad Blogger

I have changed my blog address for the final time! I know I lost many readers because of that, and that saddens me (not on purpose, but because they can no longer find me). BUT I was so excited when I received an email from a reader across the country asking about us and the blog. Made my whole day!
 
I hope to get back to blogging regularly soon!  It is a daunting task because I have to go back and change our names on every old post. Even more daunting- having to go to every post where I have linked to other blog posts and update those links to this new blog. Not to mention, taking pictures of Carousel everyday since her 4th birthday (5 months ago!) means I am way behind on my posts. Just the thought of taking pictures off my camera is overwhelming- then I need to organize them and do a post.  So, I am sorry I have neglected my blog, but I am a little overwhelmed. :)
 
Also, we moved and have been in the hotel for almost 2 months now. Our close date has been moved up 2 days!! So, now we close in 8 days!!! WAHOOO!! I am so excited and ready to settle!
 
Another reason I have not been blogging is I am still feeling like garbage. I was finally able to make a drs appointment and the week after we move in I get to go and hopefully get to the bottom of it once and for all! (after a year of drs appointments and pretty much every test you can imagine, hopefully this dr will figure it out. I am actually fairly certain I know what this is- pray we can figure this out!).
 
Here is a video of Carousel from yesterday- she is acting like she is crying. Seriously, she needs her own show on Disney Channel. I'll be waiting for that call. ;) 
video

Saturday, April 19, 2014

Just Ask The Mermaids

On Facebook I follow many Spina Bifida pages and am a member of a Spina Bifida group. Someone posted a picture with a wonderful quote:
 
"You don't have to be able to walk to be beautiful. Just ask the mermaids."
 
I immediately liked it and started to reconsider my plans for Carousel's new bathroom, (one month to go until we are in the house!).  I had been planning an elephant bathroom for her, but how perfect would a mermaid bathroom be? Luckily, in her bathroom, she has a separate room for her toilet, so I decided to make her bathroom mermaid themed and her "toilet room" elephant themed.  Best of both worlds! Since then I have painted a few mermaids that look like Carousel, bought the shower curtain, some mermaid fabric for curtains, etc.
 
Then I bought a mermaid costume for a mermaid photo-shoot. So we took off to Galveston yesterday and got some shots for her bathroom. :) All of these are full of artwork. I wouldn't usually do it so heavily for a portrait, but these are more for fun/art. :)
 


 Second favorite- notice the bird? :)
 The shadow belongs to the bird from the above picture. :)
 FAVORITE!!!






Love my little mermaid!!!
 
More info and pics about this trip and our lives coming later this next week. :)

Sunday, March 30, 2014

Winter Blues

 You will never hear me complain about the winter or snow. LOVE LOVE LOVE.

BUT since this winter was colder than usual, the bluebonnets are blooming later than usual. There were still tons, but they were in their infancy.

2011      2012     2013
























Thursday, March 13, 2014

13K

Y'all we have put over 13,000 miles on my car and we bought it almost 3 months ago! Can you believe it?! We certainly can't! Needless to say we have been beyond busy!

In February, Tex accepted a new job and we will be moving from West Texas to East Texas!

We drove to East Texas for the interview. After we came home, Carousel sent us to the hospital, (in Dallas!), two weeks in a row, (more info in a minute). After arriving home, we had to go house hunting, so back to East Texas. There we got word that Tex's grandmother had passed away, so we headed back west and after spending a day at home, we returned to Dallas again.  This was all in a month's time, y'all!

We got home from Dallas yesterday, and the movers come Monday. Aren't you exhausted just reading that?! ;)

We found a house we really like and we hope we get it! For the next few weeks until Tex starts (for pay roll reasons he got a few weeks off- hey, we aren't complaining!), ;) we will be visiting family and friends, staying with them while we are "homeless." And while that is very exciting and sure to be a blast, it also means many more miles on my car! Hopefully I'll remember to take note of how many miles we add and I will keep y'all posted. ;)

My poor blog has been so neglected and I hope to get back into the swing of it in April after we settle. Besides the move and Carousel's health, my health keeps me from wanting to blog. I have MONTHS worth of posts waiting in the wings! Once I get back to blogging, you won't be disappointed! (and if you are wondering, I think I am finally getting to the bottom of my health issues! Once Tex starts work, I will go to a Dr in our new town and hopefully will figure it all out!).

Carousel's health...

In mid February we took her to the er for vomiting (no other symptoms). (She has hydrocephalus and an arachnoid cyst that has required 5 brain surgeries itself).

She showed no symptoms other than vomiting (no other head symptoms AND no symptoms to indicate virus, infection etc), and all of her scans looked "better than ever." She was positive for a UTI, and since everything else was good they assumed the vomiting was caused by the UTI. The ONLY symptom she was showing was vomiting- no other symptoms of a UTI. They said if she didn't test positive for the UTI they would have assumed it was her head. I didn't feel comfortable leaving- I just didn't feel that was a proper diagnosis. BUT, it is hard to argue with CT scans, X-rays and neurosurgeons- everything looked great and I didn't have enough ammo to argue. (I have found out from other SB mommies that vomiting is a normal symptom to UTIs, but that has never occurred with Carousel. I still do not believe that is what caused her vomiting at that time).

A week later we were back for vomiting. The UTI was gone and she was still showing no symptoms other than vomiting. The only change? Her ventricles very "slightly" enlarged but not enough to cause action. (Shunts functioning perfectly).  I knew something was wrong- I was actually relieved to hear her ventricles were bigger. I still didn't feel great leaving, but I still didn't have enough ammo to fight.

That was about 2 weeks ago...

The last few days she has been fussier than usual, and today she put herself back to sleep after getting up at 10 am after a full 11 hours of sleep.

I am NOT convinced that there is not something going on in her head. But as I have already repeated multiple times, I do not have enough ammo to fight.

I am sick of the drs saying that she is stable, and yet she is vomiting for no reason. hmmm...

I am sick of the drs saying that she usually shows she needs surgery a certain way, and since this is different she is fine.

Really?

Well her last surgery was September 2012. She was 3 months shy of 3 and now she is 3 months past 4... don't you think it is possible she'd act differently since she is so much older?

ALSO, she has had 5 surgeries with me. Her first 3, surgeries (2011) the symptoms she showed were random crying and lethargy.

For the next 2 surgeries (2012), her ONLY symptom was sleeping ALL DAY, but once she was up she was not the least bit lethargic. We took her to the ER twice in 2 weeks (from West Texas to Dallas) only to be turned away because "everything is stable and sleeping all day with no other symptoms is not usually a symptom. Also this is not how she showed she needed surgery last time." After being turned away the second time, we went to the hospital's main campus and I put my foot down. Finally she was seen by neurosurgery and though she was stable he wanted to act.

Hmmm...starting to sound familiar? Is that not EXACTLY what is happening now?! Stable, but showing a random, persistent symptom, so they finally choose to act even though it is not by the book.

I am beyond frustrated. In both visits last month, we were seen by neurosurgeons, but not HER neurosurgeon. You know, the one who knows her best. The one who decided to act even though everyone said she was fine- and because of that action, her cyst has gone from the size of a grapefruit to the size of a golf ball AND she has not needed surgery in 1.5 years! The one who I trust with my daughter's life. Yeah, that one. He has not seen her yet.

I know she is safe. I know what to do if she shows symptoms. BUT it is frustrating to take her TWICE to the ER- get scanned, IVs, etc and then have to return at a later date to do it all again and then get surgery. Why couldn't we have done it THEN? Not to mention we are moving! ugh. I am going to be ticked if we return soon for surgery. If we go another year or whatever, then fine, they were right to wait. But if it is soon, I will be mad and will complain to our beloved neuro. And I will start to become that mom who fights pretty much everything!

You will rarely hear me complain about being a Spina Bifida mom. Really, even in the hospital, I am pleasant and just thankful to be her mommy. BUT when you know something is wrong WITH HER BRAIN, but it is not "wrong enough to act", and you just have to wait and watch- it is emotionally exhausting and super stressful.

Prayers for her symptoms to increase if she needs surgery or for them to disappear if she doesn't would be greatly appreciated! And if she does need surgery, that we wouldn't have to take her in until this Wednesday, you know, after we move!

Monday, February 24, 2014

Daddy Daughter Date

I am waaaaay behind in posting, and will try to catch up as quickly as possible.
 
By the way, have you checked out our little celebrity?
 
Carousel and her BFF had a Daddy Daughter Date at Chick Fil A the week of Valentine's Day. They had a blast!
 
Mommies weren't allowed, so I sat in the corner, taking pictures and creapin' on their date. ;)
 


 To commemorate their date, Daddy bought Carousel an elephant named, "Valentine." When she sees him now, she says, "look! It is my daddy daughter date elephant!" :)
 



 Carousel and her BFF, the guests of honor. :)



 Chick fil A had waiters and "fancy" food displays to make the dates extra special. :)
 Eating her pink ice cream :)
 all the girls were given roses as the entered CFA.
 
DANCE TIME

 Can you tell they are doing the "cha cha slide?"
 the last time Carousel saw the cow at CFA, she got so scared/upset that she threw up all over the place. I was nervous to how she'd react...
 Carousel's BFF jammin' out!




 They gave the girls mini cows. "Look at my cow, Daddy!"
 Uh oh, he's baaack...
 She turned her wheels to face him...
 success! (too bad it is out of focus!). :/ All she talked about after that point is that she got to meet and dance with the cow at CFA! :)
 Carousel's BFF showing the cow her mini cow. :)
 She would not look at the camera...
 and this is what I get for telling her to LOOK at the camera! lol
 Beautiful BFF :)
They had a blast and look forward to many future date nights! :)